Here we report the results of a survey carried out on 202 pts with brain tumours. Notably, this is the largest prospective series investigating the socioeconomic status in this category of pts.
Several studies assessed this issue through retrospective analysis. A register-based assessment carried out on Swedish pts with high-grade glioma concluded that several socio-demographic factors such as: education, income, and country of birth, influenced the care process [6]. A similar series composed of pts with low-grade glioma demonstrated that factors like income, education, and gender affected on clinical outcomes of these pts [7].
Differently to other studies, our series has the quality to be a prospective assessment in which several elements assessed have been pondered according to the patients’ own point of view.
Issues like financial toxicity, body self-image are only partially investigated in prospective clinical trials. Questionnaires are generally adopted to assess these outcomes, but the majority of them are mainly focalized on the assessment of symptoms or treatment-related adverse events impacting pts’ QoL. As a consequence, some of key socioeconomic elements could be underestimate [15,16]. Our study revealed that the diagnosis of primary brain tumours impact financial status and body self-image.
About the financial toxicity, 46.3% of pts who had received surgery at least six months before the survey reported a worsening of their economic conditions. This was often a consequence of a temporary or definitive job loss (table 3). The high financial impact detected in our study assumes particular interest considering that our National healthcare system is public and free. Furthermore, the system of social safety nets provides several economic and social supports to pts with cancer diagnosis and especially to pts under active anticancer treatment. The development of disability due to the illness allows additional economic and social supports (according to the gravity of the disability), which are completely free of charge.
It should be considered that the reduction of the financial resources is an indirect outcome, which could only partially reflect the worsening of patient’s social habits and QoL [17-19]. Studies on pts with brain tumours mainly focused on how the worsening of the financial capabilities impacted on clinical outcomes and none of them directly assessed the economic implications induced by brain tumour diagnosis and management [20,21].
The high number of patients reporting a negative financial impact suggests that this element could be a crucial hided toxicity occurring after primary brain tumour diagnosis.
Modification of the own body image is an issue rarely assessed in pts with brain tumours. In the present cohort we discovered that the pts felt less attractive regardless time from surgery. Moreover, worst body self image was more frequently reported in women (p=0.001) and pts unemployed (p=0.003).
Several aspects may affect this outcome, including scars or neurological sequels following surgery or radiation therapy other than sequelae, and adverse events related to oncological treatments. Neurocognitive toxicity depends on the site and the extension of curative loco-regional treatments performed. Long-term toxicities related to radiation therapy have been assessed in pts with low-grade glioma and consisted mainly in an attentional functioning [9]. Adverse events related to anti-cancer treatments can profoundly change social habits of pts. Some specific side effects may also worsening patient’s body self-image [22-23].
Even the treatment adopted to prevent and treat symptoms onset may worsen patient’s body self-image. Steroids are commonly adopted to reduce symptoms related to tumour-associated oedema. Chronic administration of these drugs lead to weight gains and impaired distribution of adipose tissue resulting in a Cushing phenotype [14]. Alopecia aerate could be another important toxicity resulting in worse body self-image perception [13].
All these factors could modify the body image impacting on patient’s intimacy and QoL [24]. The early recognition of this element would allow activating dedicated support aimed to rebuild the patient’s healthy body image. This outcome has been investigated in pts with breast cancer. For these pts has been also suggested a scale assessing body image and relationship [25,26].
In our series, worst modifications of body self-image affected the majority of pts and were observed mainly in women (table 2) but no gender differences emerged in sexual sphere assessment. On the other hand, about half of pts with brain tumours reported a worsening of their own sexual sphere (table 2). Considering the results of our survey, this problem may affect a large percentage of pts and should be further investigated. Measures aimed to improve body self-image should be encouraged and prospectively evaluated. Surgical and radiation techniques aimed to reduce the adverse sequelae related to treatment without interfere with clinical outcomes are elements that should be considered [27]. Hippocampal sparing radiation could be a key technique to consider as could be associated to less long-term neurocognitive toxicity without a reduction of clinical activity and outcomes [28].
The administration of steroids should be restricted only when clinical necessary and for the shortest possible time. Some alternatives anti-inflammatory drugs have been assessed but to date none of them can substitute corticosteroids administration [29]. Physical activity, muscle relaxation techniques, occupational therapy, cognitive behavioural therapy and physiological supports (also provided by web platforms) are measures which showed to be effective in other solid tumours and which could improve mental and physical well-being of pts with brain tumors [23,30-33].